Bursts of Hope Part 1: Kyle's Story - Home Care InSight Magazine

Kyle Adams, 30, is a “man of few words,” according to his mom, Audrey, who is his caregiver along with his dad, Keith. Although Kyle speaks very little, he can write and read, including complex sheet music for playing piano and cello.

In this interview, Audrey says that understanding Kyle’s needs is a work in progress, but she’s learned a lot in 30 years.

Kyle’s skills with computers and electronics got him a job at Highline Community College nine years ago as an office assistant.

Four days a week, parttime, Kyle scans and archives documents to the computer, and does other office work, too. Once trained, Kyle manages most tasks independently, but his supervisor, job coach, and co-workers assist when needed. He loves his job and they love to have him there.

A specific challenge is that Kyle is highly reactive to chemicals in his food, water, and in his environment. When exposed, chemicals cause him severe headaches and pain throughout his body.

Kyle cannot use painkillers, but applying Epsom salt cream topically provides relief. Avoidance of chemicals – abundant in processed foods, non-organic produce, and even medications, to name a few – is key to a happy, employed, pain-free life for Kyle.

Q&A with Kyle Adams

What is your favorite thing to do?
Go to work.

What do you like most about your job?
(My) own desk. (He means his own new cubicle. He loves privacy.)

What thing does your mom do that is most helpful?
Make dinner.

What makes you happy?
Barb (Kyle’s supervisor).

Who are your friends?
Casey (co-worker).

Where is your favorite place to go?
Club Thursday (with Renton Parks Special Pops).

Q&A with Audrey Adams, Kyle’s mother

When was Kyle diagnosed with autism?

In 1987, Kyle was diagnosed with Pervasive Developmental Disorder by a neurologist who said that he didn’t want to use the “A” label. There was such a stigma of hopelessness attached to autism and he didn’t want professionals to expect less of Kyle. But his symptoms were severe and, shortly after, a psychologist gave the autism label. A diagnosis at 27 months was nearly unheard of then.

How do you communicate with Kyle?

There are words in Kyle’s head, but getting them out is extremely difficult. He understands what people are saying, but can’t join the conversation. On rare occasions, he will surprise us by saying an entire sentence, but for those unfamiliar with Kyle, his words can be nearly impossible to understand.

To communicate his wishes, Kyle needs a multiple-choice list (verbal or written) to give him the words his brain can’t recall. He then recognizes the words and can verbalize what he wants. The tricky thing is to give him very broad multiple choices at first and then gradually narrow the choices, very similar to the method companies use for incoming calls.

I usually begin with, “Are you in pain, hungry, or frustrated?” Recently, during ear-splitting Tarzan yelling, he answered, “Frustrated.” So I asked, “Are you frustrated about something at work, at home or something else?” He repeated, “work.” Using this drop-down method of questioning, I discovered he was worried about a change in his work schedule. I told him the information he needed and happiness was restored.

Have you ever used communication devices?

Ten years ago, Kyle’s first job coach felt he needed an electronic communication device at work. I thought Kyle would love it. I typed in phrases or sentences and then it spoke in a funky computer voice.

Then, checking it before work, I noticed phrases missing that I had keyed in. I re-entered them, but they disappeared the next day. After several weeks, the entire speech program was gone, while all other programs were intact.

Sometimes moms are slow to understand communication. Nobody asked Kyle if he wanted a device to talk for him–he didn’t. We learned an expensive lesson. Fortunately, his language continues to improve in his adult years and the wonderful folks at Highline communicate just fine with Kyle using his preferred method, his own voice.

Does Kyle have outbursts or undesired behavior?

Yes, especially if he is hungry, frustrated or in pain. But as long as he is assured of meals, given the means to communicate his frustrations, and protected from chemicals (easier said than done), he’s great company. Some chemicals cause him to be literally wild with pain: running, jumping, sweating and screaming. Others lay him flat with a profound migraine. I didn’t just wake up one day and know this. It took me many years to understand that pain was causing the outbursts, and chemicals were causing the pain. He suffered 14 excruciating years before I had a clue that he was so horribly chemically sensitive. Converting to organic, unprocessed foods and spring water helped reduce pain and behaviors tremendously.

How do you manage exposure to environmental toxins in public?

There are a lot of things we can’t predict, like being in the doctor’s office and a woman arrives wearing perfume. In a few minutes, he is in horrific pain.

When he was getting headaches at work, Kyle’s doctor suspected the air conditioner was circulating toxins from another area of the building. The solution was a heavy-duty air purifier on his desk. We bought one for his bedroom, too. Kyle’s life, thus ours, revolves around chemical avoidance.

Kyle’s mom and caregiver, Audrey Adams, applies an espom salt cream designed for people with chemical sensitivities. (Photo by Paul Joseph Brown)

Has Kyle ever had an episode in public where people are rude and judgmental?

Unfortunately, wild-looking behavior scares people, especially seniors and families with small children. And, in pain, my son can look very scary. People don’t know pain is causing his behavior, so there is little empathy. Kyle has never hit anyone in his life, but strangers don’t know that.

I have countless rude stories from Kyle’s childhood, but these days people are much more understanding about autism because everyone knows someone with autism. Now, when people recognize autistic-like behavior, they are much better at ignoring it.

What do you do to take care of yourself?

I am lucky because I have a fabulous husband that supported our family of four, which allowed me time to focus on our family and Kyle’s needs. Now, at 60, the best thing I can do for myself is to protect Kyle from pain. If I don’t, my life can become much more complicated in a hurry.

I am so proud of Kyle. In spite of the pain he has endured, he is still full of smiles and love. He has made me so much wiser than I ever could have been without the journey of learning that he has taken me on.